The roller coaster continues, but it's on the slower part of the ride right now. Good.
It's been just about two months since my second Rituxan infusion, and so far, so good. I still get joint pains regularly, almost clockwork for early morning pains (3:00am, sometimes 4:00) but they're not as frequent as they were, and they are never as painful as they were. I call it a "3" instead of a "10" or higher. The pains last a few minutes to an hour and then they're gone. I spend most of every day almost pain free. Last time I saw my rheumatologist, I told the nurse my pain level was "0" -- almost unheard of in that office.
So, this is all very positive.
Of course the cost for the Rituxan treatment was/is breathtaking, incomprehensible. $42,000 for two 50mg infusions? (According to the prior authorization, however, I'm supposed to get 2000mg over the six months of treatment. Not sure what the deal is with that...)
When I finally got a more or less comprehensible bill, I found I was charged 10% of the approved cost of the Rituxan for each infusion, ($9,492 x 10%= $949 x 2= $1,898.) I wasn't charged for anything else connected with the treatments.
I made something of a stink because this wasn't anything like what I was told the charges would be. Because I wasn't given accurate information, I wasn't able to prepare.
I applied for financial assistance through the hospital, and after some back and forth over income documentation, it was granted: 50% reduction in all my costs associated with the hospital and my providers for the 240 days prior to my application.
Ergo, $949 for the two treatments. Somewhat more than I was prepared for, but not outrageous. I guess. Well, how can one know? Still trying to understand what I actually owe, as the charges for the Rituxan treatment have been reduced by some of the out of pocket charges I've paid for doctor visits and tests.
I am told that I will need another two infusions in October or November, and I will have to reapply for financial assistance at that time, but it will most likely be granted. So my ultimate cost for the four infusions of Rituxan should be $1,898. More than I was anticipating, but still within a manageable amount. Much more than that, though...
Which brings me to medication costs. I've been in the notorious Part D "donut hole" since last month, My prescription for mycophenolate alone is now costing $450 a month out of pocket. Add in Spiriva, Albuterol, Plaquinil, and miscellaneous other meds, and we're looking at about $1,000 a month out of pocket for the next four-five months. OK. How do we pay for that?
I checked online, and discovered a source for mycophenolate at $106 a month, such a deal. I don't use Spiriva or Albutertol unless I need them, and I rarely need them. Hardly ever. So I still have them from months ago. The other meds I take are relatively inexpensive, so if I can get the cost of mycophenolate down and can continue not using Spiriva or Albuterol, drug costs will be more or less manageable as well.
I'm supposed to see a pulmonologist at UNM today for an assessment of my lung condition which was becoming quite severe. Recent CT scan indicates that the condition has stabilized and has not progressed beyond the damage noted almost a year ago when I started taking mycophenolate. I still have some breathing difficulty but I don't use oxygen or inhalers any more.
And I'm able to get around and do things with far less difficulty than before.
It's the New Normal. Slower, more deliberate and careful, as if Old Age were settling in.
Ms. Ché is facing a whole raft of issues of her own, most of them consequences of diabetes and most of them more or less under control. I urge her to slow down. She won't, but still I urge her. She'll be going back to IAIA full time next month, three more semesters she says before she gets her degree in Creative Writing. Getting through it is somewhat more of a challenge than she was anticipating, but she's as determined as ever, come what may. And she has a lot of support. From the administration, from the faculty, and from fellow students. She may be an "old broad" as she calls herself, but she feels perfectly at home among the young pups. Sadly, we don't have the money to buy more of their art.
I know so many people are in much worse shape than we are, and I'm grateful for what we have and what we are able to share. Some of what's been going on, particularly since Ms Ché's wreck in January, has been a shock no doubt. But we carry on.